Disclosure

The onset of the disease

Introduction

Nowadays more and more people with dementia are being informed of their diagnosis. This is perhaps due to a greater awareness of the disease. Some people might not want to be informed that they have dementia. Nevertheless, it is generally considered that everyone should have the right and be given the opportunity to decide whether they would rather know or waive this right.

Pros and cons of telling the person with dementia

In many cases a diagnosis is made as a result of concern expressed by members of the family. Often the person with dementia is unaware or does not agree that they have a problem. They are therefore not interested in obtaining a diagnosis. Some might feel depressed about knowing or feel that they would have been happier not knowing. However, there are many advantages to knowing. When a person knows that they have dementia and understands what it involves, they can plan how to make the most of the remaining years of relative unimpaired mental functioning. They can also take an active role in planning their care, arrange who will care for them, make important financial decisions and even decide to participate in Alzheimer&rsquo;s disease research or make the necessary arrangements to donate braintissue after their death for research.

How to inform the person with dementia of the diagnosis?

If you feel that the person would want to know their diagnosis, you might nevertheless find it difficult to approach the subject. Some people would prefer to be told privately on a one-to-one basis, whereas others might find it more reassuring to be told in the presence of their family, who could give them moral and emotional support. Another possibility is to arrange for the person&rsquo;s doctor to tell them. You could arrange to go to the doctor together or for the person to go alone. The doctor could then answer any questions that you and/or the person with dementia might have. It is extremely important to consider the person&rsquo;s individual preconceptions and prejudices about the disease and to anticipate how they might react to certain information, as well as their ability to understand. Some people might understand an explanation of what the disease is, how it tends to progress and the consequences for daily living, whereas others might only be able to grasp that they have a disease which involves the loss of memory. It would help if the doctor were able to match the medical explanation with the understanding that the family and person with dementia have and to try to provide some kind of link between problems and solutions. Once informed, the person with dementia may need support to come to terms with feelings of anger, self-blame, fear and depression. Some might be able to benefit from counselling and support groups, provided that the disease is not too far advanced.